PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

[KevinM]

Bill, let me echo how sorry I am, and how pissed I am at this disease. Here’s hoping for a better week. Best, Kevin

 

[nona]

Bill, I'm sorry about your fall. Time on the ground is frustrating and humiliating.

 

[wmilo]

Thanks, Jessie. I kept trying to talk to the people trying to help me, but seemed to have trouble getting their attention. Your Hoyer Pep Talk thread was timely for me.

Also, thanks Kevin. I try to remind myself that the mortality rate for everyone is 100%, and I am not smart enough to know what is the "right" path for me.

And thank you, Lisa. Except for the low FVC and a weak cough, I don't feel like I'm having breathing problems but the doc wants to start support before it becomes urgent. I see the wisdom in that but in my mind BiPAP has a bad connotation.

Best to all. You guys are great.

 

[lisa g]

Bill- we all have to go with the flow we may not like giving in to the changes but in the end they're inevitable.

 

[KimT]

Hi Bill, So sorry about the fall. Every time I go to ANY doctor, the standard question is: Have you fallen or are you afraid of falling?

It's Wednesday again. Today is probably the last day for awhile that the outdoor temperature will be warm enough to go in the pool. They keep the pool water at 85. When we get cooler nights, the pool heater can't keep up. Yesterday was sunny and so is today so my guess is it will be good weather to take a dip.

I'm so tired of all this pain. I don't think I've ever had a normal MRI. My joints all have tendinitis, tears, and all kinds of things. My weakening muscles either caused or made them worse. The shot he gave me for plantar fasciitis only made the pain worse. Maybe it'll eventually work its way into making my foot feel better but, so far, ice is the only thing that helps any of my pain.

I'll play cards again with four fully vaccinated women at my condo tonight. That has been a blessing for the last two weeks. I try to work someone new into each game. My condo is big so it makes more sense to play here than somewhere else. Also, my condo is fragrance free and I'm chemically sensitive so I actually prefer it here. I have a nice large corner table with two windows at one end of my kitchen which makes a perfect place to chat, play, and have fun. I stopped serving food because many of the players are obese and I won't contribute to that. They can eat before they come.

I hope everyone has some joy in their week.

 

[KevinM]

Hi Kim...great to hear from you again. You had been off the board for a week and I’m a worrier by nature.

I’m so sorry you can’t get on top of the pain. I’m nowhere near your levels, but my weakening back and shoulders creates constant, albeit manageable, dull pain and aching that is with me all the time as other muscles try to compensate. I had been a very hard hitting tennis player about 40 years, and I know my right shoulder suffered some chronic damage. That and my tricep are where I have the most pain (and where my ALS first presented) so I suspect there is some connection. Oh well.

Had my second Pfizer dose yesterday morning and now more than 24 hours later a very minor stiff arm is all I’ve had. You just can’t tell who will get knocked down for a day or two and who will escape unscathed.

As with each week, I hope to hear from as many of you as possible. I feel this is our special portion of the forum, and my heart soars when I hear from you. Find the moments, friends. Best, Kevin

 

[Statius@]

I'll second the advice a while back to Bill not to hesitate to call 911 for help with a fall. I've done it in Iowa and Tucson and found them responsive and they know what they are doing to get someone up safely.

Had a cat scan of my liver yesterday--they've now looked at it with every medical technique I know of so I hope they can now figure out what's going on. Other than that nothing much to report. Getting ready (mentally) for the drive back to Iowa in a few weeks.

Ed

 

[Fusia]

It's been kind of a gray week for me all the way around - a lot of heavy stuff rolling around in my head tap 10… One of my main caregiver's father passed away from Covid, so she's been gone for the last 10 days. I feel so sad for her and her family - he was so close to being vaccinated, but it just wasn't in time for him. My 93-year-old father is in a nursing home in isolation, with another UTI and E. coli infection. He's now on hospice. Traveling there to see him would be extremely difficult for me, and I probably wouldn't be able to get in to see him anyway. Finally, like Bill, I am still absorbing the fact that BiPAP was advised at my last ALS clinic. I am really undecided at this point about undertaking any life prolonging measures - I'm really leaning toward letting the disease run its own course. I realize that's easy for me to say right now because I don't feel at all like I'm struggling with breathing, I'm not coughing, and my eating and swallowing are fine. (I am also working with my PCP on getting medical aid in dying established for me, which will give me some comfort in knowing that I will have some control at the end.)

On the bright side, several old colleagues have reconnected with me lately - I get the sense that so many people are so eager for some socialization that they are reaching out to old contacts. That's fine by me, I'm enjoying catching up with them. I'm meeting 7 friends for dinner tonight to celebrate a birthday. We are all vaccinated and will be on an outdoor patio. Finally, we are expecting warmer temps in the next few days, so will be able to get out for some walks in the wheelchair and also visit my 2 dogs.

I'm trying very hard to keep those moments of joy at the forefront of my daily life and always remember that I have truly been blessed in life!

Stay happy this week, my friends.

 

[lisa g]

Another eventful Wednesday. I thought of you today Bill as I had my own face plant. Not as bad as your experience but enough. I was packing a suitcase that I had opened on the floor. I purposely sat on the floor so there would be no falls. I got up on my knees to reach inside to unzip one of the inside pockets and bam, I lost my balance and went face first into the suitcase. As I tried to stop myself I slammed my hand and arm into my armoire. Pretty humiliating! I thought that I had broke my finger but appears to be only badly bruised. My own fault, I know better to put a hand on the floor to balance myself, I just wasn't thinking. It did reinforce that this disease royally sucks!!

Other than that, it's just another day in paradise.

 

[KevinM]

You know that I sometimes end my roll call post by hoping that we find our moments each day, if not unbridled joy than at least some peace and calm. But the reality is that some days—many days—there are none of those moments.

To borrow from Casey At The Bat, sometimes “there is no joy in Mudville.” Mudville...what a perfect name for the f—-cked up “town” we all inhabit. I’m so sorry and angry at the mental and physical anguish ALS brings. Kevin

 

[Krismn]

I haven’t posted in awhile so I thought I’d give an update. It seems that my progression is going fast. I had a fall last week and now I can no longer transfer from the toilet to my power chair. I’m waiting on a hoyer lift and trying to get by with a slide board for now. The stress this is causing on the family is overwhelming. I really hate this disease.

On a positive note, I was able to get an accessible van for a really good price and the weather is beautiful this week!

 

[Fusia]

Nice to hear from you, @Krismn, but very sorry to hear of your struggles and fast progression. I hope you can get out in the new van to enjoy some of the beautiful weather!

 

[blitzc]

Happy Wednesday/Thursday for me!

Krismn- So sorry to hear of your changes in progression. I really understand what your feeling. I can only transfer with the help of a trained person. Only my husband, son, daughter, and two hired aides are capable. It really sucks not being able to toilet unless someone is here and free. So far the legs hold me up for a short period to take care of pulling up or down clothing-although not always.

Lisa- So sorry about your fall. Be careful and use your assistive devices.

Kim- I was so hoping your shot would help the foot pain. Take comfort in your pool, nice wweather, and card club.

Celebration time here for me- I was given my second dose of Moderna COVID vaccine yesterday. And so far no simptoms of illness as a reaction. My arm and shoulder are a bit more sore than for the first one.

Have a blessed week everyone! Keep staying connected.

 

[wmilo]

Hi, all.

Lisa - '...in the end they're inevitable." How true! Sorry about the face plant. Those reflexive responses don't always work out.
Kim - thanks for your concern. What do you play?
Ed - good luck with the liver diagnosis.
Fusia - Sorry about your father. I try to think that the BiPAP will help me feel better while I'm here.
Krismn - congrats on getting the van! That is something I still need to deal with.
Cathy - 2nd dose! Woo Hoo!
Kevin - "There is no joy in Mudville." Love it.

Best,

 

[KevinM]

Bumping the roll call to the top early this week. Here’s hoping that we can get some more folks checking in. Several of the most helpful members have been off the forum for a bit, so I hope to hear from all you amazing people.

Trying to keep an even keel as best as possible, so long as I close my eyes when changing shirts so I don’t have to see the loss of muscle mass in upper chest, back and shoulders.

Kim, if you’re still checking in, the IBGard seems to have helped my GI issues. Thanks for the reminder. I had tried it last year but didn’t see much improvement. Better this time around. Helping to reduce my misery index a bit. Best, Kevin